having spent so much time on this forum the one thing that stands out more than anything is the lack of support from the government and authorities who seem to be letting families and children down who are in desparate need of help, i was talking to my mum on the phone about it and she suggested some how we all stand together on this and fight as its more likely to be heard than fighting individually , any thoughts on this? Eg writting to MPs etc.
Ah Adel, do you mean "Push for Action" perchance. It has still only been pushed a number equivalent to less than 20% of those adults diagnosed with autism. I have to say it has lost momentum. The NAS website gives conflicting messages, and undermines its credibility.
Part of the problem is still that most lobbying is done by parents groups on behalf of children.
The fact those children grow older and become adults, not to mention all the adults out there, seems to make no odds. Even though it is like a conveyor belt with everyone piling off the end at 18, parents groups still only fight for children on the spectrum.
And remember NAS is primarily a parent power organisation. The messages NAS sends about adults (as I've demonstrated on this forum), is muddled and is not having the necessary impact.
The problem for adults with autism is that parents are getting old and on reduced funds as a pension or have passed away. They cannot continue fighting for adults.
The adults, because of the difficulties they face, may be unemployed or in a poorly remunerative job that means they cannot fund their own advocacy and representations.
But worse, if you admit you've got autism, you are not considered capable of making a case. I don't mean in the legal sense, but officialdom will blank you just because of an attitude problem towards the disabled.
As a scientist and academic I've tried to enter discourse with the Sheffield and Cambridge autism organisations, and other research centres, and have been brushed off, very much in the manner that if I've got the condition I cannot help.
And then there's this theory, still doing the rounds, that if you've got a good job, or you have a lot of ability, you cannot really have autism. So you don't count. There's even this idea that still persists, that university academics get diagnosed because it enhances their professional image (don't ask me how they work that one out).
And then there's the old cookie about the public at large. Everyone knows the little man in the street has opinions, often inaccurate or ill informed. You only listen to bona fide scientists. But the scientists studying autism, as I've pointed out on another thread are doinf very little on adults with autism, and if at all it is only on those severely affected.
So who is speaking up for adults on the spectrum?
NAS needs to start listening to us, and acting for us, rather than simply pushing the latest campaign at us. I've followed up on campaigns, writing the required letters to MPs and Local Authorities and doing the research. I feed it back to NAS and if indeed I get a reply it doesn't sound like they are interested. But I also do a lot that is not a response to NAS initiative, but my own quests, and believe me it is hard going trying to get people to listen.
Whether we could act collectively I don't know. This discussion forum would be a good way to get concerns across, if we knew officials and health professionals were reading this.
They've got their own discussion forum, which we cannot really join without lying. And whereas they could come on our forum without registering, as guests, we cannot go on their forum as guests. Which should tell you something more about the snooty attitudes out there, which are not helping....
Ah Adel, do you mean "Push for Action" perchance. It has still only been pushed a number equivalent to less than 20% of those adults diagnosed with autism. I have to say it has lost momentum. The NAS website gives conflicting messages, and undermines its credibility.
Part of the problem is still that most lobbying is done by parents groups on behalf of children.
The fact those children grow older and become adults, not to mention all the adults out there, seems to make no odds. Even though it is like a conveyor belt with everyone piling off the end at 18, parents groups still only fight for children on the spectrum.
And remember NAS is primarily a parent power organisation. The messages NAS sends about adults (as I've demonstrated on this forum), is muddled and is not having the necessary impact.
The problem for adults with autism is that parents are getting old and on reduced funds as a pension or have passed away. They cannot continue fighting for adults.
The adults, because of the difficulties they face, may be unemployed or in a poorly remunerative job that means they cannot fund their own advocacy and representations.
But worse, if you admit you've got autism, you are not considered capable of making a case. I don't mean in the legal sense, but officialdom will blank you just because of an attitude problem towards the disabled.
As a scientist and academic I've tried to enter discourse with the Sheffield and Cambridge autism organisations, and other research centres, and have been brushed off, very much in the manner that if I've got the condition I cannot help.
And then there's this theory, still doing the rounds, that if you've got a good job, or you have a lot of ability, you cannot really have autism. So you don't count. There's even this idea that still persists, that university academics get diagnosed because it enhances their professional image (don't ask me how they work that one out).
And then there's the old cookie about the public at large. Everyone knows the little man in the street has opinions, often inaccurate or ill informed. You only listen to bona fide scientists. But the scientists studying autism, as I've pointed out on another thread are doinf very little on adults with autism, and if at all it is only on those severely affected.
So who is speaking up for adults on the spectrum?
NAS needs to start listening to us, and acting for us, rather than simply pushing the latest campaign at us. I've followed up on campaigns, writing the required letters to MPs and Local Authorities and doing the research. I feed it back to NAS and if indeed I get a reply it doesn't sound like they are interested. But I also do a lot that is not a response to NAS initiative, but my own quests, and believe me it is hard going trying to get people to listen.
Whether we could act collectively I don't know. This discussion forum would be a good way to get concerns across, if we knew officials and health professionals were reading this.
They've got their own discussion forum, which we cannot really join without lying. And whereas they could come on our forum without registering, as guests, we cannot go on their forum as guests. Which should tell you something more about the snooty attitudes out there, which are not helping....
